Hello all, I am new to this site/forum but wonder if anyone is willing to share some info with me please ref Peristeen.
I was first diannosed with MS 33 years ago and have had good and bad times since while my GP insisted that he did not feel the diagnosis was correct.
Due to this I have not had follow up with Neuro clinic or nurse etc however over the years I have collected a few other diagnosis along the way
FM
PA
Hypothyroid
Diabetes type 2 ( no meds and never been out of normal range in 5 yrs )
Stroke
Last year started to really push my GP because of my many neuro symptoms…his stock answer has always been " what does it matter what we call it "
Beacause of this I self reffered to continence clinic having probs. They referred me to have urodynamics and result is self cath 5 times a day…due to MS causing residual retention. Same issue with bowel so continence nurse suggested Peristeen, GP authorised it in Feb. Cutting a long story short finally got a call from Coloplast to ask how I am getting on with Peristeen…haven,t got it yet ! After numerous calls to continence nurse she finally admitted she had got letter from my GP but had not ordered the system for me and she would rather the Coloplast nurse deals with it.
So now waiting for a call back from Coloplast.
I had said I did not need home demo, I have seen the kit, know how to use it, am fully aware of risk, happy to sign to say I take responsibility but they still insist on being with me at first use.
When I heard that I wanted to opt out as I hate the thought of doing the deed infront of her but it is also embarassment that my home is messy and cluttered and I always try to avoid people ( even friends ) from coming here.
So I have to bite the bullet and hope this nurse is poor sighted lol
Mainly anyone who uses this system has any advice to give me any at all…it will be really welcome.
Like to welcome you to the board. Sounds like you have been battling away. I can’t offer any advice but thought I would bump you up the list. Take care Barney
Hi you said that you have PA - is that pernicious anemia. It is just I have been having neuro symptoms and fatigue since 1991 ! Things were very mild at first. Then numbness appeared in 2005 and spasticity in 2009. Clear MRI in 2005 but lesion seen in 2011. B12 was low and was given monthly injections. a few weeks ago I discovered that PA can cause lesions similar to those seen in MS. MS has been suspected but due to low number of lesions and 2 clear LPs it has never been officially confirmed. Anyay I contacted the PA society and they advised more intensive B12 if nerve damage has been done. My consultant agreed and I am now on B12 jabs every other day. It has only been a week but my husband has already noticed that my walking is better. I had noticed too but thought it was only the placebo effect.
Your GP may have been right all these years saying the MS diagnosis was wrong. I have bought a book “could it be B12” and it is not uncommon for people to be dx with MS when they have PA especially all those years ago when you had your dx.
Go on to the PA site - there are documents that you can print out to take to your GP to persuade him to give you more B12. After all it is him who doesnt believe you have MS!
No way my GP will increase my B12 injections…believe me I have begged, demanded, pleaded everything.
I have looked at PA site and read loads on it and it seems to me my symptoms could be due to one of several things or indeed a mixture of any of them.
Finally got coloplast nurse to give me a date…she said she would visit me today…but today I was at another hospital 50 miles away so it is set for next Weds after I managed to weedle my way into getting a GP to do the dreaded DRE on Monday.
Coloplast nurse had said it could be accepted as done but then changed her mind as she must be seen to follow protocol.
So next step is Peristeen, then after todays app at Rheumy clinic app for injections in both knee,s and another xray both knee,s but those are easy to cope with.
I need to go with the flo I guess and get this next week out of the way…and talking of getting things out of the way I only hope I can get hubby and son ( 35 yr old son ) out of the house before the Peristeen torture regime starts
Hi Ell, At one time it was recommended I use peristeen. No problem obtaining it. My MS nurse came round to explain how to use it. BUT no demonstration required that would have just been too embarrassing for me… She was quite happy and just let me get on with it myself in private. Good luck Min xx
I was going to start this, i understand coloplast will suply without presciption bt myGP prescribed it. However just had to have colonoscopy so just waiting for biopsies and follow up appointment before i start. I would say Coloplast have been very supportive and after the colonoscopy nothing about my bum will embarrass me, a part from maybe it’s size, (joke). Also the coloplast nurse will wait ooutside bathroom while you do the first one if you don’t want them in the room.
The Coloplast nurse came to my house but she just told me how to use it and I never suggested having a go while she was there and she didn’t mention it either. You might find she is happy to just run you through the method verbally and demonstrate without you actually having to physically use the equipment while she is there. At the end of the day if she does insist then you’ll never see her again and as Twinkle3 says you could ask her to not actually be in the room with you. The first month is really trial and error but once you get using it it really is something you wont want to be without.
Good luck and if you get any teething problems people are full of advise so do ask.
i used it with success for 18 months but following a huge relapse the district nurses came in and did it for me. now i have permanent carers in and it was all getting too much for me so gave up the peristeen to accomodate even more basic (i am aware moving bowels is a basic neeed but i had to prioitise…i know cope fairly well with varying doses of senna but that took months to establish any sort of pattern.
you have loads of good advice already…take care, ellie
I really hope the coloplast nurse ( she is coming Weds ) will go with the verbal demo but am pretty sure from her phonecall she expects me to use it with her there as she told me it may take an hour which is what I had alreadt been warned by continence nurse.
I really feel like refusing point blank to do it with her there but am worried about putting people,s backs up and not being allowed to have the kit.
I have to go for rectal exam Monday or she wont even bring me the kit.
Hi Ell Yeah I hate my bum too. You are in an absolutely dreadful position. I am absolutely outraged by what is happening to you. We are supposed to be treated with dignity and respect. If it were me I wouldn’t stand for it. From posters on this site myself included it is clear that there is no need for nurse to be present when you first try the persisteen. Saying you have to go for rectal exam before getting the kit is outrageous as well. I think that you are being BULLIED. . If it were me I would contact MS nurse and GP. I would then expect one of them to contact your awful Coloplast nurse to put a rocket up her backside. Really hope goes OK Hugs Min xx
When l first decided to try the ~Peristeen - l contacted Coloplast - they sent me the dvd - then arranged for their nurse and my local incontinence nurse to bring the ‘kit’ to me and show me how to set it up. They stayed in my bedroom whilst l used it - giving me advice and encouragement. Nothing embarrassing - until the kit went into action and l was emptying my bowels. We were able to laugh about it - which always defuses a tense and embarrassing situation.
Don’t forget - this is their job - they are doing this all the time - and its also their choice to do so. And l find them all wonderful.
And as someone pointed out - once you have had a colonoscopy - nothing will bother you ever again.
Hi Ell, How odd there are tabs above everyone else’s reply saying send private message except mine. Maybe I’ve inadvertently opted opt but I don’t think so as happy to pm with any one. Anyway I’ve sent you a pm so you can just reply to me. Hugs Min xx
Hi Space jacket and thanks for your reply, I know I should just accept it but partly I think I am fed up because I have been given so many different info,s by my continence nurse, who then when off on hols and forgot to put my prescription through etc etc.
I saw 2 different incontinence nurses who said I did NOT have to have them there when I used it, only if I wanted.
Eventually because Coloplast phoned me about my Catheters I asked if my Peristeen had been ordered and they said no which prompted a call from their nurse.
Well peeps as is often the case worrying about todays visit from Peristeen nurse was worse than the actual visit.
She was really nice, used to be an MS nurse so we got sidetracked a bit then she went through all the questions and facts on her forms and tick boxes and then got the gear out…demo then the dreaded
“ok so now you get to have a go” NO THANK YOU I REPLIED She laughed and said ok, I will pack up the kit and go then but in a nice laughing way.
She came to bathroom with me, filled the thing primed it and then said ok I am going to check my phone messages…she sat in kitchen ( told her to make herself some tea if she wanted and she offered to make me one )
It went fine but I was so anxious to get it over with I got off the loo too soon…ooops never mind had got a pad on incase as usual so back to loo and finally sorted.
Now I have a licence to irrigate here in Norfolk if anyone heard that they would visualise a massive machine in a field spraying acres of crops !!!
Thanks again for the support I,ve had on here…you are all brilliant and if anyone is facing the prospect of Peristeen I reckon it is easier than ISC now I have got the dreaded demo over with.
I’m new to this forum and new to peristeen! I’m a mum of 2 (3 and 7) and need to get this poo problem under control, I use ISC already but I have this new ‘equipment’ to master. I was prescribed this due to my bowel unpredictability, mainly very constipated but 3 instances of losing control. I’ve used it 3 times in the last 6 days and still very anxious leaving the house, my bowel feels delicate and I still have the urge for a poo the day following an irrigation. I’m feeling slightly disheartened as I was probably expecting more immediate results, how long until I feel in control??
